WHY INDIA NEEDS TO WAKE UP TO PALLIATIVE CARE?

How many of you can answer this without google-ing it? (Let me know in the comments below.)

Palliative care has been around for more than 75 years in this world and yet many of us don’t even understand what it means.

I didn’t know anything about palliative care.

Back in August 2017 when the doctors told us that Ira’s recovery is near-to impossible, another question loomed in our minds largely dreadful like the recent Kerala floods. Is that it? Now we take Ira home and do what? And how? If it hadn’t been for Dr. Deepali Eksambe, neurologist at Surya Hospital, Wakad we would have been still floundering in the mess that our life was turning into. It was she who introduced us to and educated us about ‘end-of-life’ care.

So again, what is palliative care?

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. [1]

By and large, palliative care involves symptomatic medication, pain management and mental well-being of patients and families. It ensues to provide physical, mental and emotional support to patients and easing their suffering and journey unto death. Comfort of the patients and their families is key here.

Palliative care does not involve any curative medications and intends neither to hasten nor postpone death. In fact it affirms dying as a natural process and ensures a dignified life and peaceful death. Moreover, it is a coordinated effort between doctors, nurses, counselors, social workers and family members.

India has a national programme on palliative care with the Indian Association of Palliative Care at its apex. Yet, Indians are blatantly bereaved of the comfort and care that such centres impart. “Just 2 % have access to palliative care in India”, says Dr. M.R.Rajgopal.

WHY?

Because the country does not have a policy for implementing palliative care. Out of 29 only 2 states – Kerala and Karnataka have policies on palliative care. [2]

In India, in general, we believe in treating a 90 year old grandfather or grandmother with failing kidneys, a weak heart or feeble lungs in the hope of prolonging life no matter what. That this entails having to put her/him on dialysis or ventilator or intra-aortic balloon pump is hardly of any significance. Later, we rather say we tried whatever we could than deny passiveness in refusing to treat an already dying old body. Doctors too are afraid to stop treatment for facing the wrath of the family members, not to mention that it is more of a business for them.

Jo Chopra’s article in The Wire about the state of palliative care in India is like a twisted knife in the wound. The headline of the article reads ‘Planning to die? Don’t do it in India if at all possible’.

Death is bitter pill to swallow, isn’t it? There’s fear of losing the loved one and the shock of absence later. When will we accept that death is a natural process? Our conversations should be as much about living as about dying- dying a natural and graceful death.

If you ask me, do I fear death? The answer is no. I fear suffering. I would say death is better than seeing your daughter in a vegetative state, in pain and helpless for the rest of her life. I have seen so much suffering around me during all those hospital visits that I’ve had that I believe that a quick and peaceful death would be more better.

B. J Miller, a palliative care physician talks about honoring life and death. He talks about what really matters at the end of life! Do listen to this TED talk.

India needs to wake up to Palliative Care. There should be policies and plans to do so and public education and awareness about it.

Ira’s entire treatment, since October 2017, is being managed by Cipla Palliative Care Center in Pune. They offer in-house and home visits to cancer patients, family counselling and a holistic approach to personalized care. It is probably the best care-giving place that I have been to since April 2017, with a staff of affectionate people, lush green premises and utmost transparent communication between doctors, patients and families.

I am 4 year old Ira's mum (mumma). This blog is about Ira's journey through cancer and dealing with it together as a family. It is also about building a perspective of life, spreading things worth sharing and of love and hope.

4 Comments

Gautam Kalasur

I believe everyone learns about palliative care when need arises. Same is the case with me. Such is the unawarness that having crossed cipla palliative care centre several times never did it interest me to learn about it until need took me there. If situation is with an adequately educated person like me can understand what the rest of folks may be aware of, add to it the anxiety during treatment, no. of confusing options/ opinions, and our own mind that doesn’t want to accept that we have run out of all options.

Fortunately there are people/ institutions contributing towards the cause of dignified living during this end of life cycle, and making efforts to makes lives of family & relatives simpler during this tenure. Their contribution is a boon when hospitals and doctors have hung up their boots with the case.

Personally have recommended Cipla to many since my experience with them about 6years ago and appreciate their work extensively.

Pratima Mehta

Thank you for sharing Ira’s journey with us. And also for being very generous in sharing information about palliative care and the specific medical condition your daughter is coping with. They may not be writing back but I believe you are helping a lot of people cope.

Having been caregiver and also having experienced the loss of some close people, I know firsthand how difficult it is to cope. And how much palliative care and its practitioners help.

I had the opportunity to be associated with Cipla Centre some years ago and I am well aware of the wonderful work they are doing.

I wish Ira peace. And I would like you to know that many like me are with you and your family.

Pratima Mehta

Thank you for reaching out sir. It means a lot. Your words have given me a drive to continue writing here, which was at a slack for some time past. Thanks again. May all of us find the strength to continue doing things that benefit others in some way. Regards.